Patchwork Collective: Pharma to table

In this episode, Jimmy sits down with Brian Burkhardt of the Oliver Patch Project and Andy Shepherd of Project Outrun to talk about the Patchwork Collective, a growing coalition of pediatric oncology advocacy organizations working to bridge the gap between families battling childhood cancer and the clinical trial world. From a "Pharma at the Table" activation at SCOPE to the upcoming Patches & Pairs launch at Give Kids The World, Brian and Andy share how relationship-building and education are the keys to advancing pediatric representation in clinical research. 

Transcript

Jimmy Bechtel 0:00

Hello and welcome everyone to SCRS Talks provided by the Society for Clinical Research Sites. I'm Jimmy Bechtel, the chief site success officer with the society, and today I am so honored and lucky to be joined by two of my favorite people in the world. they are a light at our Site Solutions summits. Many of you have met them and it's so great to have them in the SCRS ecosystem. Brian Burkhardt is the executive director and co-founder of the Oliver Patch Project, and my buddy Andy is the executive director at Project Outrun. And we're gonna talk a little bit about the Patchwork Collective and how this idea, this concept, this really important organization, this multi partnership organization has really brought voice to a very special and underrepresented population in clinical trials and what that means for the rest of us. But before we get into that, I would love to learn a little bit about each of you individually, gentlemen. Brian, why don't you start us off a little bit more about your background and a little bit about Oliver Patch specifically?

Brian Berkhardt 1:02

Sure. Thank you, Jimmy We're super excited to be here We're huge fans of SCRS and again, it's an honor to be here. Our core program at Oliver Patch Project is supporting kids battling cancer throughout the US. And we have other other programs that are mental health initiatives specifically with the program within the clinical trial support space for all pediatrics globally. That's how we are interacting with the clinical trial world and how we've gotten involved. And that's a kind of a little bit background. As Andy knows, I can talk, so I'm gonna keep it really short and sweet. But for us it's really about love, support, and community in everything we do. That's the core of what we do.

Jimmy Bechtel 1:40

Thanks, Brian. And Andy, over to you.

Andy Shepperd 1:43

So my name is Andy Shepherd. I'm the executive director and founder of Project Outrun. Project Outrun is an organization that empowers and strengthens families as they battle pediatric cancer. We do this in a myriad of ways. First of all, we have a sneaker support program where we let kids design their shoes, their colors, their messages, whatever empowers them down the recovery road. We really believe that mindset and movement are medicine. We do all sorts of things like end of treatment celebrations. We call them finish line festivals. We provide athlete interactions and experiences for kids during treatments because we really do believe, like I said previously, that mindset and movement are medicine and that sport can help heal. And we've worked with, in the past nine years, over 11,000 families, all 50 states, 400 hospitals. We're just really proud of the work that we're doing, and the work has led us here to have conversations with you and to be a part of the SCRS family and When we started these things, we wanna be involved in solutions, and we wanna understand what's going on in the landscape of the clinical trial world

Jimmy Bechtel 2:36

Excellent. Again, super excited to have you guys here. I wish we had an hour to talk, but, we'll cram it into our standard time here. So let's kick it off, guys and maybe tell us a little bit about the collective and what it is and what was the moment or experience that kind of made you guys realize that something like this, this collaborative, needed to exist?

Andy Shepperd 2:57

It's been such an amazing journey because Brian and I were running this, our programming. We would be, like, fans of each other from afar and message each other and support each other, and then finally we hopped on a call and we realized that we had such a common interest, and at the heart of everything that we do was patient centricity. And we really were trying to explore opportunities for us to collaborate and really push forward this agenda of how do we help families, how can we be solution-based? And Brian had the opportunity to go to SCRS.

Brian Berkhardt 3:23

Having the opportunity to go to SCRS and really share our story from, one parent's experience going through this more than anything, Jimmy it made me realize One, the disconnect between what I thought clinical trials were and who they were for and what their purpose was. There was such a disconnect between what I knew. And also surprising that the community, the clinical trial community didn't really have much of the stories, especially from the pediatric world on the impact they were making, which was a huge impact, right? That disconnect for me was really amazing, and I realized there was tons of place and that, be- being that liaison between those two worlds you know, was something that, I spoke with Andy and I'm like, "Andy, you have to come see what this is all about"

Andy Shepperd 4:07

I had no idea. I was like, "Brian, there's no place or space for me at the pharmaceutical table. What am I gonna talk to them about?" He's like, "No, there's an opportunity because we are storytellers Every time a kiddo designs shoes with us, that's a shoe story, and we have thousands of stories to share that add color and context to these kids' journeys. And a lot of these journeys are involving, oncology medications, and some of the people at SCRS Oncology, were behind advancing. And so when I got into that place and that space and started having conversations with the people doing the work, I suddenly realized, oh my goodness, you guys are our people, and my families need to understand that I've seen behind the curtain and I've seen the people doing the work, and they all have amazing stories to share.

Brian Berkhardt 4:43

Yeah. And you know what? the biggest thing is we're stronger together, right? And what we realized that we wanted to share this space, especially with pediatric representation, which is often not so much at the forefront of development. We realized we wanted to share this world with other organizations that were there to be solution-oriented, right? The Patchwork Collective is gathering these other organizations that are into moving the needle, understanding some of the problems potentially in the pharmaceutical world, but being there to find solutions and move that needle forward, right? And that's where the Patchwork Collective is. That's what it is. That's what it's all about.

Andy Shepperd 5:18

But simply put, when we went there, we started to understand that the questions that needed to be asked from our side, from our family side, of what is out there at the time of the diagnosis And even navigating the clinical trial space is so daunting that there's just such a disconnect. And so Brian and I kinda got to work, and I will say that Brian's a collector and a curator, right? So he has all these relationships with all these foundations within the oncology space.

Brian Berkhardt 5:42

And basically what Andy did was he's got such a great community with his with his families. And he is like boots on the ground in the hospitals with his families, with the stories. And we realized that together both of us there was a huge opportunity for us to bring these families' stories to a world that hasn't heard, and also bring an education to our families of what they don't know about clinical trials.

Andy Shepperd 6:07

But I think the beautiful thing of SCRS, what they enabled, was us to become very relational within the pharmaceutical world, to really meet the people that could help us to advance both sides, 'cause that's really what we're about. Like we wanna find reciprocally beneficial relationships and partnerships and collaborations that it, that help us advance this movement of finding solutions for families. What the amazing thing now is that Brian and I are working on and have worked on, all sorts of things. Brian, can you speak to what we did at Scope that was just so much fun to take that to the table?

Brian Berkhardt 6:38

Yeah, so SCRS has always been such a huge supporter of ours from the very beginning. It was the first time that we launched The Patchwork Collective and, and since then we've been able to share that, that messaging and that support that we've gotten. We had an opportunity at Scope to do this really amazing thing where I was able to bring eight other advocacy organizations there and we did a whole setup called Pharma at the Table. We were introducing us to pharma and inviting pharma to come and sit and talk with us and have a, a royal sit-down in many ways. we try to do everything from a, a playful manner and we had this whole crazy fun like dinner-type setting. And you know what? The interactions and the engagements we had from many of the big industry organizations was tremendous. The conversation was great. And our common goal was the same- make sure the patient voice is in everything and also from us bringing that education that when you're dealing with pediatric, your patient is the family, right? Your patient's a family and just being able to share that and understand where there could be tons of room for improvement and also understanding the limitations that they have. It was an education on both, both sides.

Jimmy Bechtel 7:44

It's really incredible, guys. And to hear it's humbling, right? To hear that we've been part of this this journey for you guys. And a- again I wanna tease out something that you had mentioned specifically, Brian, in that our pediatric patient population, the population that you both and other members of the collective serve are oftentimes underrepresented or misunderstood. Right? There's so, so many challenges that we face with the pediatric patient population. So what does that gap look like uniquely from where you all sit, and why is the visibility in that space such an important part of what we're doing right now?

Andy Shepperd 8:20

To be honest, what we hear is the clamoring from all of our families is more research. But in order for that to happen, you need the science to enable that to happen. So for there to be science to take place to provide solutions you need trials. And to have trials, you need participants, right? So there's a huge education gap between our families and the clinical trial space, but I think that's, it's not just in pediatrics, we as a society, there's a gap in understanding clinical trials. So I think there's a whole education piece that has been interesting for us to start to unwrap that. after I went to SCRS, I came back to my families and I provided a base level of understanding of "Hey, at time of diagnosis, what else is out there? What have you looked at? Standard of care is great, but potentially there are some things out there that may save you with chemotherapy or may be on the precipice of being approved." You need to know. You need to be your number one advocate But I do think that, one, there's a huge education gap that we're trying to bridge, right? And two, there's a trust gap, and the only way you build trust is through relationships. And I think Brian and I have always stressed to anybody that we're working with, we need to be very relational before we can get transactional, right? so if you're interested in bridging this gap, you need to love our families like we love our families, support our families with wanting nothing in return, and support them so that you build the trust and you build the education. And I think those two things will get us to the place where we can start having families enrolling in trials because they understand what they're getting themselves into, and it's not this daunting last resort scary monster in the corner.

Brian Berkhardt 9:46

And also you gotta realize within a clinical trial, you have a family participates in a clinical trial, some of our families are very active socially, right? If they're left that trial with a bad taste in their mouth that is shared on a huge platform. Some of our families have 200,000 followers plus, right? And I think what's really important is, you say retention, we say support, right? And I think it's two different ways of looking at it, I think outside of, okay is the numbers there as far as the studies and how is it affe- like, where's the mon- outside of the basic business side of pharma the fact is that we really need to make sure that our families are aware. When we got the stats that there were so many studies that couldn't find participants, like when we have our families that don't know about any studies, it was like a... Jimmy, it was crazy. Yeah. Why is that the case? And part of it's because of the way that clinicaltrials.gov has been set up. I think now with a lot of the new AI developments in it, it's making this, this accessible from, and lay for, for families to really understand. We're at a very exciting time.

Jimmy Bechtel 10:53

That's exactly right, guys. thank you so much for so many of those points, right? It's an awareness challenge that we face. It's a comfortability, right? Let's face it, clinical trials, just the term clinical trials can be scary to- a lot of people. So the advocacy work, even insularly that you all do for this is huge in this space. And then it's the make it make sense concept which you just mentioned, Brian. It's how do we translate this into something that, humanizes the process? And I think our patient advocacy groups like you all play a critical role in helping make sure that translation can happen for the patients that are, like, like you said, Andy, that can benefit from this, right? Yeah. Even if it's in a small way it eases the burden of, particularly in the oncology space the types of treatment or the form of treatment in which that patient might unfortunately have to undergo. So then for our audience who lives and breathes clinical research, and a majority of them do here, where does that world intersect with what you're doing in Patch Collective? Or you've alluded to it several points here, but maybe succinctly talk to us about where this space of, direct patient advocacy and most importantly support, again, intersects with the work of that direct clinical research aspect.

Brian Berkhardt 12:13

For us, we specifically have a program that's called the Retential, Retention Patch Program that we work with Innovative Trials. They've helped us bring this to the industry, and this is basically a support program within clinical trials. there is something actionable that can support our families in these studies, that's running globally in over 28 countries is super, super exciting.

Andy Shepperd 12:34

And our motivation was always for SCRS is form relationships. And I think Sean was always so encouraging in saying "I want you guys to come away with this with opportunities to cr- to do some of the magic and get some funding for some of the magic." So United Therapeutics is an amazing organization that Brian has worked with before, and they were looking for an opportunity to do something at Give Kids The World which is the Make-A-Wish Village. Everybody thinks that Disney. Make-A-Wish has their own facility. All the wish-granted kids go to Give Kids The World It's one of the most magical places. It's its own separate foundation, and Project Aaren had the privilege of going on site last year and doing a really cool activation So Brian came and said let's see what we can do to collaborate with United Therapeutics and get them on site at Give Kids The World and do something amazing." And so Brian and I came up with this idea of Patches in Perries You wanna talk about that a little bit Brian?

Brian Berkhardt 13:21

Yeah. Basically what we realized, again, going back to we're stronger together, we realized that we wanted to come up with something that was engaging both of our families from a, an actionable, instantaneous kind of like we meet them, we provide them something, they belong, they're included immediately. This is a project that obviously needed funding, and they came behind and were like, we wanna help bring this to your families," so we're going to, to be launching this at, Give Kids The World, which is a, such an amazing opportunity where it's just piloting to then have our national impact with it, but to have an organization that truly at the core believes in what we do, and this is how it all is full circle for us, Jimmy.

Andy Shepperd 14:03

Because of SCRS believing in our work and wanting us to form these relationships, it's enabling us To jumpstart something that we believe will become a national program that's a collaboration between two nonprofits, which This doesn't happen. Like pharma and philanthropy in the past haven't really mixed very well. And we have found an ability to find the right partners that just wanna believe and push the programming because they wanna build the trust and the relational piece which we talked about previously. Education And trust, right? Education and relationship. If we can get those two things right, I think we can advance what everybody's trying to figure out how to advance, but it's gonna take investment in those two pieces, and United Therapeutics has decided that they want to invest in those two pieces with us, and we're so excited to, to launch Patches Pairs at Give Kids the World in October, and share all of the magic with you guys.

Jimmy Bechtel 14:52

super exciting, guys. Onwards and upwards, right? it's been really fun to see the journey materialize through the path that you all have taken, and the interest that you've been able to garner in this really important work. So exciting to see and hear about the next iteration. And, it'll coincide very nicely I think with the global summit and the work that we're doing here. Keep us all apprised. I can't wait to to talk and learn a little bit more about that as we move into it. Sure. But I'll move on to our final question here, guys. So talk a little bit about what, what impact looks like for you, and whether it's a story or a data point, a metric, or just a moment that stuck with you that tells that what you're doing is working and like I said, it's continuing to move us up the ladder.

Brian Berkhardt 15:36

I think for us it really goes back to the family, right? It really goes back to the patient, really goes back to the kid, and we are blessed enough to see our impact. a lot of people in the clinical trial world don't realize what they do. We get to see it. We get photos every single day, families, testimonials, what it means, how this is affecting their life. And, it's funny from what... I think in the beginning, the idea of a patch, "Oh, that's cute," what... it's part of making them feel belonged. So I think for us, data for us is not at the forefront of what we do. Yes, we have huge impacts on larger level and larger scales, but, and I think this has also been something that there's been a re-education for us about, all this conversations of patient centricity and patient-led programming and clinical trials, all that emotional stuff is in the beginning, but at the end it's not really acknowledged as evidence at all. And that's something that, that we're really trying to change. You can't p- provide provide a platform that these families can get on emotionally and that, not acknowledge that as information that's important. There's proven data that when a family feels supported and loved and belong to a community, Their treatment works. It helps these drugs work. So I think for us it's goes back to the... For me, it goes back to the families.

Andy Shepperd 16:54

No, a million percent. We had a family recently, a Indianapolis family, and when we were out at an event, and the mom messaged me a picture of Ty, Tyler. He's a cross-country runner, 14-year-old, and he was walking the hallways and he was the fastest to ever clear his chemo. So the chemo that he had, very toxic chemo. you gotta get it out one of a couple of ways, and sweating is one of those things, so they obviously encourage walking to help clear the chemo. So he had walked four and a half miles in his outruns with his IV pole and cleared it as fast as anybody's ever cleared it. So I was so proud of him, and it's just such an example of how movement truly is medicine. He took it one step further and decided to walk a half-marathon during the half-marathon in Indy that won the next weekend. And he's just such an example. And then when he started doing that, all the kids started coming out of the hallways and watching him do this amazing feat. And his plan is, he doesn't end treatment for another year and a half, but he plans to run home from the hospital. It's 13 miles from Riley to his home. And we do our end of treatment celebrations, which are like miniature finish line festivals with blowup arches and cheerleaders, and it's an absolute party. So we're going to Indy to help him run home and tell his story in January of '28. And that, to me, is exactly what Project Outrun is about. It's about giving you this tool that, that makes you a part of a community. Our PHAST family is what we call it. But the hope is that it gets you up and moving, and that you see that there's actual physical, tangible evidence that getting up, getting moving can help for the solution-based end result. And to me, giving kids a tool that is metaphorical and literal, like again, with Brian's things as well, like these are useful items, but they have such intrinsic value 'cause these kids are able to curate and control a controllable in a time that feels really out of control. So to us, the metric is that, is seeing kids relearning to walk, getting back up on their feet, using our shoes as a tool, and then using that finish line metaphor to help them reach significant goals.

Brian Berkhardt 18:50

And in the end, Jimmy, listen, our goal is to help every kid that are, that is battling cancer, right? Yeah. To this day Andy and I, we have impact. I've sent patches over to 125,000 kids, right? That's what you're talking about. We're doing programs in public schools. We're doing, we're educating. Awareness is everything to what we do. So that's what we really focus on and really making sure that we gather these amazing group of people together and can also champion our cause.

Andy Shepperd 19:13

And we like to think that my shoes aren't shoes, they're solution based, and Brian's patches aren't patches, they're problem-solving based. because of our programs, we've been able to present to an audience that generally foundations don't get to present to, and we get to be on the inside track of what's coming along in the industry, and we get to take that back to our families and let them know that there's so much hope. And being an intermediary, we feel so much responsibility to keep carrying the message and keep pushing the envelope, and we're just proud of having the opportunity at SCRS believing in us. Because honestly, None of the things that we've been able to do- in industry would have happened if SCRS hadn't said, "Your guys' stories need to be told." So we're always so grateful and thankful to you guys, Jimmy. And we love all of you guys so much, you know that.

Jimmy Bechtel 19:55

We love you guys, too. And like I said, it's been a really fun road together seeing you guys not only at the SCRS summits, but also at other events- Yeah industry events and doing your thing and getting connected to the clinical research enterprise and what that's evolved into is really powerful and amazing to see. So thank you, guys. And thank you for your continued support of the work that SCRS does, and most importantly, the patients, right? It probably goes without saying because that's the ethos, that's the mission, that's the drive for you guys. But it really is amazing to see and and really fun. And so thank you guys for your time today, and thank you for helping us learn about, not only what your organizations are doing, but what's next and some examples, some tangible examples of the work that you have been doing and this collective has been doing in this space. It's really starting to reflect itself in the success of patient stories.

Brian Berkhardt 20:46

Thank you. Thank you, and thank you for everything you guys do.

Jimmy Bechtel 20:48

Absolutely. Thanks again, Brian and Andy, for being with us here today. And for those that are listening, make sure to check out other site and patient-focused resources like additional podcasts, webinar series, and opportunities to hear from our friends and partners like the Patchwork Collective through articles, and meet them at SCRS events like the Site Solutions Summits. All of this information is available on our website, myscrs.org, and I definitely encourage you to connect individually with Brian and Andy their organizations, and of course, the Patchwork Collective if you haven't already. I know they're on various social media channels, and again opportunity to shake their hands at various industry events. But again, thanks for listening, for tuning in, and until next time.